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At our platform, we believe the most powerful insights come not just from research and statistics, but from lived experience. Today, we are honored to share the story of Michael Turner, a 42‑year‑old father of two from Austin, Texas, who is living with Huntington’s disease.

Michael’s journey is one of resilience, honesty, and hope. In his writing, he takes us beyond the medical definitions to reveal what it truly means to live with a rare, inherited brain disorder that affects movement, memory, and emotions. His perspective is both deeply personal and universally relevant, reminding us of the strength of community, the urgency of awareness, and the importance of cherishing every moment.

As you read Michael’s words, we invite you not only to learn about Huntington’s disease, but also to reflect on the courage it takes to share such a story. His voice is a call for empathy, advocacy, and action.

Over to Michael: Living with Huntington’s Disease

Hello, my name is Michael Turner, and I live in Austin, Texas. I’m 42 years old, a father of two, and someone who never gave much thought to genetics until life forced me to.

Today, I want to share my journey with Huntington’s disease. It is an incurable, inherited brain disorder that slowly changes everything about how I move, think, and even feel.

I’m writing this not just to tell my story, but also to shed light on what Huntington’s really is, because most people have never even heard of it. If you search online, you’ll find the usual medical definitions, but I want to give you the inside view, the patient’s perspective.

The Beginning: When Symptoms First Appeared

It started subtly. At 36, I noticed I was dropping things more often. My wife teased me about being clumsy, but I knew something was off. Then came the mood swings, anger one moment, sadness the next. I chalked it up to stress from work.

But when I began having trouble remembering simple things, like where I parked my car or the names of colleagues I’d known for years, I knew I had to see a doctor.

After months of tests, I was referred to a neurologist. A genetic test confirmed it: Huntington’s disease (HD).

What Is Huntington’s Disease?

For those unfamiliar, Huntington’s is caused by a mutation in a single gene: the HTT gene. This gene normally produces a protein called huntingtin, which is important for brain function. But in people like me, the gene has an abnormal repetition of DNA code—something called a CAG repeat expansion.

• If you have fewer than 36 repeats, you’re safe.
• Between 36–39 repeats, it’s uncertain.
• Above 40 repeats, the disease is almost guaranteed.

I had 44 repeats. That number sealed my fate.

What makes Huntington’s unique is that it’s autosomal dominant. That means if one parent carries the gene, each child has a 50% chance of inheriting it. I have two kids, and this is the hardest part of my story, knowing they may face this too.

How Huntington’s Affects Daily Life

People often think of Huntington’s as just a movement disorder, but it’s much more complex. Doctors describe it as a mix of Parkinson’s, Alzheimer’s, and ALS rolled into one.

Here’s how it shows up in my life:

• Movement problems (chorea): My body makes sudden, jerky movements I can’t control. Sometimes I look like I’m dancing when I’m just trying to walk straight.
• Cognitive decline: Planning, organizing, and remembering things is harder every day. I once managed financial portfolios; now I struggle with balancing my own checkbook.
• Emotional changes: Depression and irritability are common. I’ve had to learn that it’s not “me being me”, it’s the disease altering my brain chemistry.

Something You Might Not Know

Most articles stop at describing symptoms, but here’s something new:

Huntington’s doesn’t just affect the brain; it also impacts metabolism and the immune system.

Recent research shows that people with HD often burn calories faster than normal, even when they’re not moving much. That’s why many of us lose weight without trying. Scientists are also finding that inflammation plays a role in how the disease progresses.

This opens up new areas of treatment research, like targeting the immune system or metabolism, not just the brain.

Current Treatments (and Their Limits)

There is no cure for Huntington’s disease. But there are treatments that help manage symptoms:

• Tetrabenazine and deutetrabenazine reduce involuntary movements.
• Antidepressants and mood stabilizers help with emotional symptoms.
• Therapies like physical, occupational, and speech therapy keep me functional longer.

What’s exciting is the research pipeline. Scientists are testing gene-silencing therapies. This research aim to reduce the production of the toxic huntingtin protein. Some trials use antisense oligonucleotides (ASOs), tiny strands of DNA-like material that “switch off” the faulty gene.

It’s still early, but for the first time, there’s hope that future generations may not have to live with this disease.

Life in Austin with Huntington’s

Living in Austin has been both a blessing and a challenge. The city is vibrant, full of music and energy, but my condition forces me to slow down. I can’t enjoy live concerts the way I used to because the crowds and noise overwhelm me.

Still, I’ve found community here. There’s a local Huntington’s support group where families share stories, advice, and sometimes just a shoulder to lean on. Knowing I’m not alone making a huge difference.

The Family Side of the Story

The hardest part isn’t what happens to me, it’s what might happen to my kids. Every parent wants to protect their children, but with Huntington’s, I can’t guarantee that.

There’s a test they can take when they’re older to see if they carry the gene. But it’s a deeply personal choice. Some people want to know; others prefer not to. For now, my wife and I focus on giving them a normal childhood, filled with love and laughter.

Why Awareness Matters

Huntington’s disease is considered rare, affecting about 30,000 people in the U.S. But “rare” doesn’t mean insignificant. Rare diseases often get less funding, less research, and less public attention.

By sharing my story, I hope to change that. Awareness leads to research, and research leads to treatments.

Lessons I’ve Learned

Living with an incurable disease teaches you things you never expected:

• Time is precious. I no longer postpone joy. If I want to take my kids fishing or watch the sunset with my wife, I do it now.
• Community is powerful. Support groups, both online and offline, are lifelines.
• Hope is essential. Even if a cure doesn’t come in my lifetime, I believe it will come.

Key Takeaways for Readers

If you’ve never heard of Huntington’s before today, here are the most important things to remember:

• It’s a genetic, incurable brain disorder caused by a faulty HTT gene.
• Symptoms include movement problems, memory loss, and emotional changes.
• It’s inherited in a 50/50 pattern, if one parent has it, each child has a 50% chance.
• New research is exploring gene-silencing therapies and the role of metabolism and immunity.
• Awareness and advocacy are crucial for progress.

Final Thoughts

I don’t know how many good years I have left. But I do know this: my story isn’t just about loss. It’s about resilience, love, and the determination to make every day count.

If you’re reading this, I hope you walk away with more than just knowledge of Huntington’s disease. I hope you feel inspired to live fully, support medical research, and maybe even share this story so others can learn too.

Because while Huntington’s may shape my future, it doesn’t define who I am.

DISCLAIMER

The views expressed in this article are the author’s own and do not represent any medical advice.